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A MyLupusTeam Member asked a question 💭
Troy, PA

I've had test done before it time was a 4, then a 3, now at a 6, I have Raynaud's and I am just plain tired and sore all the time. Can someone please help.

December 23, 2019
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A MyLupusTeam Member

Hi there. Monitoring anti-dsDNA is important since levels usually vary with disease activity, high titers indicating active disease, low titers quiescent disease. Laboratories vary in how they report the test. Some do so as 0-4+ (3+ and 4+ are high), others as numbers, which vary with the test. To know which is high you have to know the range used by the laboratory. Sounds like your Raynauds is active or about to become that way, i.e, flare. You can call your rheumatologist's office for more info regarding your results. It is your right to know.

December 23, 2019
A MyLupusTeam Member

I do have Hashimoto's. My PCP is very good and listens and is testing everything again in late February... I am going to be going to a new Rheumatologist, I am waiting for an appointment... My orthopedic Dr saw RA On my knee MRI and refurred me.. I cannot take Prednisone, we don't get along... I was on plaquenil, but that too didn't agree.... My last Rheumatologist was only concerned about my Raynaud's and would not listen to me., My PCP saw and told me that I have the butterfly rash, is concerned about me... (I didn't tell him, he noticed). I mentioned it to my former Rheumatologist and she blew me off about it. So I am pretty much back to square 1...
I had a ccp that was 25 a couple times also...last time back to negative... As well as the antidsdna at 6 in November....

January 8, 2020
A MyLupusTeam Member

Thank you.. my Dr told me that it is in the indeterminate range and is testing me again in 3 months.

December 27, 2019
A MyLupusTeam Member

You mentioned something was wrong with your knees? That could be the cause of the increase in CRP

Blood counts are usually the first sign of Lupus. I’m not sure if I’ve come across anyone yet who doesn’t regularly test either low for Red Blood Cells, White Blood Cells or Platelets. If you routinely test low for any or all of those blood counts it’s another indication. Not everyone with low counts has Lupus obviously but I think almost every with Lupus winds up with low counts pretty regularly. It’s at least something else to look out for

It’s a long journey. I hope you find answers and can then get to feeling better!

January 8, 2020
A MyLupusTeam Member

The ANA is the key to it all. Without a positive ANA they are unlikely to consider autoimmune problems as ANA negative lupus is incredibly rare, so much so many Drs aren’t aware of its existence

ANA goes up and down all the time so the negative test result isn’t the end of the story but you might have to fight to have them rerun the test over time to determine if it’s ever positive

Are you in steroids? Prednisone? That knocks down antibodies and will give you a negative test result

Have you been to an endocrinologist? Hypothyroidism has very similar symptoms to Lupus and that should be ruled out first

I’m sorry you haven’t found answers yet. It’s exhausting but keep fighting

January 8, 2020

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